Monday, January 14, 2013

I was really looking forward to seeing the BLOOM talk called Let's talk brothers and sisters that happened back in November. I knew that the family giving the talk had a daughter with special needs and a younger, typically developing son. Since I have the same dynamics in my family (two daughters, the older one with a genetic condition causing global developmental delay), I knew I wanted to hear their story.

The parents, Nathalie and John, helped their kids give a short presentation that explained their close relationship as siblings, their beloved pet rats, and how their lives are affected by Melanie’s syndrome and other people’s reactions to her. Then, they talked about how they dealt with Melanie’s syndrome as it relates to Tommy. They covered how they helped him to understand her challenges, how they comfort him when he’s upset about people’s reactions to her, and how they have worked to let him express his feelings about her and their sibling relationship (see the book they wrote here and their website here).

I reacted very strongly to this talk and I’ve been thinking about why ever since. I think it was mainly due to how open this family was. Obviously, a certain level of openness is expected if you’re standing in front of a group giving a presentation, but it was more than that. I really felt that this family is comfortable with how they are navigating life with a child with special needs and her younger brother. And they were willing to let all of us see that life with all its bumps and thrills.

When they moved on to answering our questions, they continued to let the audience in. And not just to the happy images of the two kids playing with their rat friends and the media attention that Tommy has received with his desire to tell people about his sister. They were just as comfortable telling us about the difficulties of raising a child with special needs: the heartbreak of hearing another child tease yours because she’s still in diapers and doesn’t know her ABCs or the attempts to comfort her brother who doesn’t understand the taunts he hears at school.

Nathalie made one particular comment that gave me such a clear view into the way this family has chosen to open up to those around them. She said that if Tommy ever came home upset that a child had made fun of Melanie, her first reaction is to tell him to invite the child over. That blew my mind! I think it’s so generous to understand that kids (and adults) often react negatively to a new and different situation out of fear or uncertainty rather than out of malice or cruelty.

Instead of retreating from the negative feelings of others, Nathalie’s instinct is to lean in, and believe that being open and welcoming will help her own children as well as those who might not know how to behave around those who are different. And that approach has succeeded, as kids have reacted positively to Melanie when they see her at home with her family and get to spend some time with her and Tommy together.

To see their mother respond that way is so rewarding for Melanie and Tommy. They’re learning to let people in, to teach and offer people new experiences rather than resent those who don’t understand a different kind of family.

It's tempting to look at what this family has done as a blueprint. I thought to myself, “If I write a book with my younger daughter about her older sister, then we can tell other people about it and help them learn that children with special needs are such special siblings, etc.” But, in fact, what Nathalie and John did was listen to what Tommy wanted and help him express his feelings about Melanie in a way that made him feel comfortable and powerful. I look at my younger daughter, who's only just three and doesn't even know that anything is different about her older sister, and I wonder how she'll react when she hears others comment on her big sister's difference. She'll have her own way of expressing how she feels about living her reality and, whatever it is, we'll be there to help.

I hope to be as open as Nathalie and John have been with their kids and those around them. I think about it almost daily, how I'd like to model that kind of generosity and belief that people tend to surprise you when you give them the chance.

We face an uncertain future – about my older daughter’s life, how she’ll exist in the world, how others will react to her, and how all of it will impact her sister. But I can always choose to focus on some certainties: the love and support we’ll give our daughters no matter what, and our option to remain open and trusting. I’m grateful to Melanie, Tommy, Nathalie and John for reminding me of that.

Sarah Weinstock (above with Rae, left, and Willa, right) is a family leader at Holland Bloorview.

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